Why should my family participate in an epilepsy registry?

  • To partner with researchers interested in rare genetic forms of epilepsies and to understand them better.
  • To develop studies of rare genetic epilepsies to find better treatment options.
  • To get up to date information on rare genetic forms of epilepsy.
  • To be informed about new research projects that could benefit families with epilepsy.

Where can I join?

Rare Epilepsy Network (https://ren.rti.org/) The Rare Epilepsy Network (REN) is a collaboration between the Epilepsy Foundation, RTI International, Columbia University, and many patient organizations for rare or genetic epilepsy syndromes. The REN has enrolled more than 1000 participants and collects important information from each family, to match families with research projects. Global Registry participants in the USA are encouraged to join the Rare Epilepsy Network at https://ren.rti.org/Participate. Please contact Barbara Kroner, PhD if you have any questions.

The NETRE Registry (formerly the PTIRPE Study Group) is a collaboration of more than 350 scientists from 12 countries who are studying genetic diseases including epilepsy. Please contact Celina von Stülpnagel-Steinbeis, MD for questions or to join the NETRE Registry.